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Sucking it up and asking for input

Discussion in 'Other Health Conditions and Diabetes' started by JoKalsbeek, Jun 30, 2020.

  1. JoKalsbeek

    JoKalsbeek Type 2 (in remission!) · Well-Known Member

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    Give a shout whenever you get around to it, I'll still be here. And yeah, it's Hashi's, has been for over 15 years now. And no, didn't get a complete blood panel. TSH 0.18, free T4 was 16,7. I'm on 100 micrograms of levothyroxine a day now, down from 125. (Used to be 175micrograms 4 years ago, so I guess this is progress?) Doc shot off a new form to me before I could ask for a complete work up though, but still. She promised when I'd get my next thyroid check (4 weeks, little less) she'll go over other things too. The new form includes liver function and iron, so we'll get that covered. And it seems to have sunk in that this isn't a vanity thing. She's willing enough to help, it seems, which is good. Nice not to be brushed off, like the endo would've.

    Just seems like there's a whole lot clashing with even more other stuff, from pre-existing conditions to triggers to foods and, and, and.... I have to figure it out by looking at the tip of my nose or something. I'm making things up as I go along, feels like. So every bit of info I can get is welcome.

    And no, nothing glib about it. I know you're sincere, and it helps to be heard. Thank you.
    Jo
     
  2. Antje77

    Antje77 LADA · Moderator
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    Hi @JoKalsbeek ,
    Here's another with no advice (I don't even know what half of this stuff is about, thankfully) but I wanted to wish you all the best with finding out what tricks your body is playing on you this time.
    And I heartily agree with every compliment you've received on this thread!

    Dikke knuffel!
     
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  3. Robbity

    Robbity Type 2 · Expert

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    Just another big hug while you'r waiting to get things resolved...
    I've no advice to offer, except don't EVER feel because you offer help and advice you're not able to ask for it too!
     
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  4. Chook

    Chook Type 2 · Expert

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    And another big hug from me! I can't help with your medical issues but I hope you find a solution soon. xx
     
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  5. HSSS

    HSSS Type 2 · Well-Known Member

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    This is why we’re here. To support each other and you do more than your share of that so ditch the guilt about asking. And being proactive in seeking health is a good thing.

    I’ve had thyroid surgery for suspicious nodules that biopsy couldn’t identify so IF, and it’s till a big if, that looks on cards let me know if you think my experiences could help or support you. Spoiler it all turned out ok after a lot of worried waiting.

    Can you be referred to a different less apathetic endo this time? Not sure what control you have over there with who you see.

    Can't help much in other ways other than to say I’m here if you need me.
     
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  6. copilost

    copilost Type 2 · Well-Known Member

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    There are some lovely people on this forum but one really stands out, always gives wise, intelligent and empathetic advice.
    I'm gonna quote them:
    "That is NOT your fault, and no failing is involved whatsoever."
    Can't quite recall...... jo something or other, has pretty black and white cat avatar.
    :cat:
     
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  7. DCUKMod

    DCUKMod I reversed my Type 2 · Master
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    OK, @JoKalsbeek , here we go.

    Jo, please do ensure you follow through with ALL the investigations for all options, and of course including the ultrasound of your thyroid. That it is swollen clearly suggests something isn't right, but not necessarily that it's something requiring immediate or urgent action.

    As I'm sure you are aware, our thyroid glands are at the cornerstone of out metabolic health, and if it's off-kilter, then so many things can appear awry. The list of potential symptoms for hypothyroidism are as long as your arm, and a bit like diabetes, some people experience lots of them, and others few.

    https://thyroiduk.org/signs-symptoms/signs-symptoms-underactive/

    Firstly, I would strongly challenge why your doctor considers you have hyperthyroidism. Hyperthyroidism is identified by a set of antibodies. They can be identified by testing for very specific antibodies . In order to acurately diagnose true hyperthyroidism, it is necessary to take a positive TRab test along with elevated FT4 / FT3 (and usually rock bottom TSH).

    Do you identify with many of the hyperthyroidism symptoms?:

    https://thyroiduk.org/signs-symptoms/signs-symptoms-overactive/

    As you already have a Hashimoto's diagnosis, whilst Graves Disease (hyperthyroidism) is not impossible, it is much more likely an individual could be experiencing a Hashi's Hyper, (if hyper at all) but in all honesty, I don't believe the thyroid tests you have had done can tell you that.

    Yes, your TSH is low, but that often happens when an individual is taking thyroxine. The following image are my own bloods, from a period when I had been on Levothyroxine for over a year. My medication regime was changed in 9/20, to add T3, but as yet, it is likely I am sub-optimally medicated. I feel much better with the T3 on board, but I am still very much a work in progress.

    upload_2020-6-30_17-1-12.png

    In all of that do you see where mt TSH and FT4 levels have been? Until 11/19, I was feeling rubbish.

    Jo, when you had your thyroid tested, was there a 24 hour gap between your last T4 dose and the test? Do you also take any supplements? If you do, do any of them contain Biotin? If they do, it is possible they may be skewing your results in some areas. (If that's the case a quick Google of "Biotin Assay Interference" will return some further reading material. However, if that is in play, it is important whatever is containing the Biotin (often a Vit B complex) is paused for at least a week prior to any testing.

    Was your Vit D tested? Like soooo many things, that can interfere with out thyroid function, so for a decent panel, as well as the TSH, FT3 FT3, antibodies, it is good to ensure vitamins D, B12 and folate are tested (and in a good place). Ferritin you already have. Did you have CRP done?

    If you are unable to take the VitD tablets, have you tried drops or spray options? I am fine with a D3+K2 tablet, so have no wisdom on the fluid options, I'm afraid.

    Now, this next bit I may just be making up; but do I recall correctly thinking along the way you may have chronic fatigue syndrome or ME? If so, there is a school of thought those can be improved in many by good thyroid management.

    Finally, if you were seeing my Endo, he'd have you on a strictly gluten-free diet. He recommends it to all his patients with autoimmune conditions (AI), as he finds they tend to do well on it. At the last time of testing, I don't have AI conditions (much to his astonishment, based on family history), but he still suggested I adopt it. It has actually made quite a difference to me.

    So, Jo, that's my 2p worth. I reiterate, in your shoes, I'd want everything tested, even if I felt it was just to rule things out. That does need to be done.

    You suggest you're going to be retested for your thyroid in about 4 weeks. At that point, how long will you have been on your reduced dose.

    If you find any of your systems changing - better or worse, please track and note it.

    When I started to realise my Thyroid was going off-piste, I found the Thyroid UK part of HealthUnlocked. HealthUnlocked is a bit of an umbrella set-up for help fora. https://healthunlocked.com/thyroiduk

    Why not make yourself an account over there. There are members from all over the world, so you'll feel at home. My view is that that forum is the DCUK equivalent for those with thyroid challenges. I have and continue to learn a huge amount from them.

    I feel for you Jo, it's pretty rubbish when you know, and everybody agrees something is wrong, but you have no answers to your questions.

    If I can help in any way, just let me know. I will just reiterate that I'm not medically qualified in matters thyroid, aside from living with one that well and truly lost the plot.
     
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  8. Mrs T 123

    Mrs T 123 Type 2 (in remission!) · Well-Known Member

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    Hi Jo - I am so sorry you are having a tough time - you are no fraud and hey we all need help sometime and you are one of the first, if not the first to help many on here which is hugely appreciated. Sorry I am not able to offer any advice as I have no experience of your other conditions. Just sending you big hugs and hope you get everything sorted and you are feeling better soon. Take Care Mrs Xx.
     
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    #28 Mrs T 123, Jun 30, 2020 at 7:32 PM
    Last edited: Jul 1, 2020
  9. bulkbiker

    bulkbiker Type 2 · Oracle

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    No you are not in any way means or form.

    Sorry I can't be much help with advice although I have found that extended fasts have got me through stalls and re-gains. I'm always wary to advise them though because they can be quite hard to do and might not be for everyone.
    Have you thought about maybe a lighter extended fast like egg fasting or something like that? No idea if it would help but is a lot less extreme.
     
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  10. MrsA2

    MrsA2 Type 2 · Well-Known Member

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    Sending hugs from a relative newbie.
    And I'd echo that the thyroid is the epicentre. Get that sorted and the rest will follow.
    I had a goitre 20 years ago. Half my thyroid was removed and the remainder has worked unaided ever since, so I was lucky, except I do wonder if that underpinned my now descent into diabetes.
    Keep pushing to make sure you are thoroughly looked after
     
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  11. Dr Snoddy

    Dr Snoddy Type 2 · Well-Known Member

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    Just to follow up on DCUKMods useful comments, I find D3/K2 spray easy to use and effective. I try to have daily sun exposure but the ability of the skin to synthesize Vit D declines with age and there is increasing evidence that inadequate Vit D May contribute to a whole range of metabolic problems. Vit K2 is necessary for the correct functioning of Vit D. While I much prefer to get vitamins and minerals from food sources Vit D is one that I do supplement.
    I really hope that your current difficulties are able to be sorted. You have done so much to support others on this forum!
     
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  12. DCUKMod

    DCUKMod I reversed my Type 2 · Master
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  13. JoKalsbeek

    JoKalsbeek Type 2 (in remission!) · Well-Known Member

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    I won't have the results until tomorrow afternoon, as the lady only does the scanning, not the evaluation of the ultrasounds. I am dead curious though. Which should help when it comes to having to make a phone call for the results and to see what's next..! As for the rest of your very, very detailed post.... Oh my. That's... I have a feeling I have to re-educate myself about my thyroid. I know I knew a lot of stuff about it once upon a time, have read books like I did about T2, but somehow it just al faded into the background and vanished. I do seem to remember there was an antibody test done 15 years back, that came up with Hashimoto's. Once I started losing weight I needed less hormones, and according to the GP I've over-medicated. Should've checked the last decrease and gone from there, but corona happened, and well, you know how all that went when it came to regular check-ups. I have many, many symptoms from hyper and hypo overlapping, and additional conditions that could explain a bunch of those symptoms as well, so the waters are quite muddy, murky, and basically opaque as heck. Is it the Vit D (I have tried all ways of taking it except for a topical cream, guess that's next tho'.), the Sjögrens, the younameitivegotit...? Fatigue fits the bill in all of them, for instance. And I haven't been extremely fatigued in such a long time, as the low carb practically fixed that. Bummed that it's back again. (Massive understatement...). And I have to be honest: since reducing the dose last week, my thyroid isn't this rock-hard entity in my throat. It's still here and it's still swollen, but it's not as hard as it was and not strangling me as badly as it did until recently. Haven't been choking on my food for a few days anymore either. So she might not be barking up the wrong tree, as it has had some effect. After our cat (the late, great, one-eyed, blind and diabetic pirate cat Night) developed cancerous tumors, well... I'll never forget how hard they felt, those killer pebbles that took our little boy, and while I didn't feel "balls" like there were with him, my thyroid was as hard as those tumors were, so that was scary.

    I'm sorry I'm all over the place, but I'm feeling a little overwhelmed. I did a carnivore OMAD yesterday, which I intend to do today as well, and this morning I'm weak, walking like I have sea legs on land, and my arms/hands are trembling. My fasting's a 5,1 which I am thrilled about, hasn't been this low in a while, and I've lost a kilo between today and yesterday morning... But I'm not sure my body's not ticked off at me at the moment. I have been going over thyroid- and gut-unfriendly (FODMAP? lot to learn!) foods, so I guess my beloved cheesy cauliflower and broccoli are out (****, have a freezer full), and I've gone over possible meals with my husband yesterday, seeing whether he remembered stuff I didn't, and the like. And while I remember having more carbs back then, I also ate more meals... Which I don't really need to anymore as I usually do fine on two. I can skip the berry-ish breakfast for sure, which was the carbiest meal of my day for instance. My tea and coffee (decaf), 'll suit me just fine 'till 12 or later.

    In any case, thank you for your long, thorough reply... It's given me lots of food for thought and avenues to explore. And I'll be hitting our own modest little library in the spare bedroom, because I know I have books there that I really need to re-read.

    Again, thank you.
    Jo
     
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  14. lessci

    lessci Type 2 · Well-Known Member

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    Hi Jo,

    Hope you get some answers soon and can start to resolve your issues. Thyroid problems are the pits. My Dad had Graves disease in the early 1980's( all the classic symptoms weight loss, bulging eyes, very short temper) - was over medicated and ended up in hospital with heart failure! I had an overactive thyroid about 12 years ago, but with none of the classic symptoms. Went to see my GP with VERY swollen feet, he sent me for a full blood panel and I was making to much T4, but converting the correct amount into T3, a years worth of meds and it corrected itself. I still run on the high side of normal, but the only noticeable side effect of this is I "run hot" meaning when everyone else is shivering with the cold I'm running round in a vest top and opening windows. My Mum has had 2 different types of thyroid cancer at the same time, and a total thyroidectamy. She was told that she'd never be classed as cured, but in long term remission but 10+ years later she's been signed off from the oncologist and just has to have blood tests to keep a track of her levels. We're all a bunch of crocks. You can do this
     
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  15. DCUKMod

    DCUKMod I reversed my Type 2 · Master
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    @JoKalsbeek - I've been pondering your predicament a bit more, and I'll add a bit more context to my earlier contribution, to explain how I "see" how the thyroid works (or doesn't). However, a couple of things, if I may.

    You didn't include your lab assay ranges with your levels? To be fair, thyroid levels seem to be fairly standard, with modest assay variations, but it's worth checking.

    Secondly, you talk about hypo/hyper muddles up symptoms? Which hyper symptoms have you been experiencing?

    As I understand it, with Hashi's sometimes this swinging around happens. I'm not hashi, so my reading around the specifics have been pretty high level, to be canded.

    However, onto my vision of how the thyroid works.

    TSH - is a signalling hormone, produced in the pituitary gland, to tell they thyroid to push out the theyroid hormone T4. It tells nothing more than how hard it is having to work, to get the thyroid into action. That's why, when this goes high, it can indicate the thyroid itself is sluggish, or ineffecient/effective.

    Once diagnosed, the T4 we take each day allows the pituitary to relax, because the T4 is already present, by virtue of taking the tablets. One treatment for thyroid disease is in place, the value of TSH as a health marker is not quite meaningless, but it certainly should not be used to make any judgement on thyroid health. An exception to that would be if it continues to be very high, even with therapy in place.

    T4 is a passive hormone. In itself, it doesn't do too much. In a natural state, our bodies, fiendishly clever things they are, gets on with converting the circulating T4, to make T3. This is where the exciting things happen!

    T3 is the active hormone in he thyroid portfolio (although, T1 and T2 exists, it is unclear - to me anyway - exactly what they do). T3 is the magic that helps us feel better, reducing our symptoms and bringing our metabolic health back into line.

    Without measuring T3 levels, nobody knows how well your T4 is actually working, and/or how well your body can convert T4 > T3. Obviously symptoms can be an indicator, but a lot of that is guess work.

    Before the TSH test was discovered, all T4 dosing was done, based on symptoms, not data, but we are where we are now.

    For some people, the conversion form T4 to T3 is very efficient, and they do well with just some oral T4, but for others, like me, their bodies can't for whatever reason, convert T4 to T3, so those people can end up on significantly higher doses of T4 than one might expect (based on a very rough rule of thumb, based on weight and age), with no significant impact on their T3 levels.

    I reiterate, you really do have to eliminate all potential causes of this perfect storm of rubbishness you seem to be experiencing right now, but in your shoes, I would want to see an Endo who understand Hashi's and how fickle things can be if they have a flare.

    Bearing in mind Hashi's is essentially an autoimmune condition, where the body sends out antibodies to attack the thyroid, that could be an explanation for your swollen, unhappy thyroid. This is what the NHS says about it:

    https://www.nhs.uk/conditions/thyro...e thyroid is destroyed,to form in your throat.

    Jo, I take from your initial post that you see less thyroid hormone as being a positive move. Thyroid hormones are a bit like insulin. A person needs what that person needs, and with Hashi's your needs can change from time to time.

    I hope something in there might be helpful to you, but to be honest, Jo, I'd get myself over to HealthUnlocked and pretty much post your first post on there. If they do, they will ask for the assay ranges, to calculate how far into the ranges you are. Many people find they need to be well up in the ranges before they feel good.

    They will also ask about vitamins and minerals I mentioned yesterday, because four our thyroids to work well, those levels need to be a in a decent place.

    However, they are my massive learning resource for thyroid matters. My knowledge, although hard won, is still a the baby steps level, b comparison to those guys.

    I feel for you. Get those ultrasound results and don't panic if they show nodules or whatever. Like many other unwelcomed lumps and bumps they can be perfectly benign, but obviously that has to be checked out.
     
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  16. JoKalsbeek

    JoKalsbeek Type 2 (in remission!) · Well-Known Member

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    Baby steps.... I can't call all this a baby steps level. This is a lot of information. Fount, even. And hopefully, stuff to go on... I know I should get a full panel done, but that's where the anxiety comes in: I don't dare ask for a new form right now, though it might come up tomorrow when I have to call for my results. Still, since it's the assistent I'm dealing with, I'm not counting on it. But then, 4 weeks from now I'll get another go at it. In the meantime I might be doing better with the dietary changes. Gods, I hope so. Having to walk to the hospital again, knowing the endo I'd get (and switching is not easy), kind of feels like a walk to the gallows for me. I don't know. I 'm aware I'm headed towards doing all these things, but slowly. Working up to it. ;) And another forum... I'm okay here, but entering into a whole new one...? Yikes. People. Eek. Here at least i know what i'm talking about, there I'd be.... Lost. Like a N00b. On top of being all panicky because of there being so many people. ;) My bloods are attached including the ranges, (sorry, it's all Dutch, but I think they make sense?), but I suppose there's a lot of information still missing. (Vits, mins, complete Thyroid etc). Also attaching a PDF with the symptoms. Not only do I tick boxes in both hyper and hypo, a lot of these symptoms show up in T2, Sjögrens, PCOS, Vit D deficiency/osteomalacia, astma, blepharitis and what have you. That makes it complicated. And that's also why I thought my fatigue 4 years ago was caused by my thyroid: I didn't think it could be something new entirely, but it turned out it was T2 wearing me down.

    It's all a bit much right now, physically and mentally. I'm kind of at the end of my tether, so I'm sorry if I'm not especially coherent. I'm glad I asked for help, because without the responses here, I barely would've known where to start. And it helps that they're written down, I'll need to come back to all this and process it in bits and pieces. Like learning about diabetes all over again. I tackled that, I should be able to get a bit of a grip on this too. I hope. ;)

    Thank you, again.
    Jo
     

    Attached Files:

  17. JoKalsbeek

    JoKalsbeek Type 2 (in remission!) · Well-Known Member

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    Absolutely Everyone,

    Thank you all so much for your lovely, informative, comforting and supportive responses. I am not good at receiving compliments, but I'll try and be gracious about them. ;)

    Thank you!
    Thank you!
    Thank you!

    Much love to you wonderful, wonderful people!
    Jo
     
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  18. DCUKMod

    DCUKMod I reversed my Type 2 · Master
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    Jo, you need that T3 tested. Your FT4 isn't in a bad place in the range, and your TSH is suppressed. Your FT4 is certainly not dangerously high, which, if you were true hyper, you would have a a very high FT4 and T3 readings, so you have half the picture.

    When taking thyroid replacement hormones (such as T4, or T3), TSH usually does go down. It's meaningless, and trying to get it up high is only putting your body under strain, in my humble, non-medical opinion.

    Many UK GPs just plain old have as scant an understanding of thyroid disease. In fact, I would say, it makes their knowledge of living with diabetes look in the Einstein category.

    Ideally you'd have your antibodies too, although having had a positive test (I assume), to be diagnosed Hashi in the first instance, some medics see no value in testing again, however if a flare is happening, the antibody levels would likely be elevated.

    For a hyperthyroid diagnosis, the following are usually in play:
    • TSH will be decreased in hyperthyroidism. Thus, the diagnosis of hyperthyroidism is nearly always associated with a low (suppressed) TSH level. .
    • The hormones themselves - T3 & T4 will be increased. For a patient to have hyperthyroidism, they must have high thyroid hormone levels. Sometimes all of the different thyroid hormones are not high and only one or two of the different thyroid hormone measurements are high. This is not too common, as most people with hyperthyroidism will have all of their thyroid hormone measurements high (except TSH)
    I'm really struggling to get onboard with your GP's assessment, but I feel certain you can tell that. :)

    Honestly, Jo. You need to talk with someone who actually understands this.

    You cite your anxiety as a barrier to having further testing done, but you have high anxiety due to NOT having adequate testing done. What you have now does you no favours. Having high anxiety having the tests done at least has the positive that you are actively pursuing answers. As you are now, you're stabbing in the dark; changing your diets and so on.

    I absolutely know how frustrating thyroid disease is. It took me years to get a diagnosis, then more than a further year, to get to the beginning of a medication regime that actually helps me feel better and have a much improved quality of life.

    I've had the challenges of working through the various barriers to wellbeing. It stinks, but sooner or later, I fear it's going to have to be done.

    If you have issues arguing and communicating your case, do you have someone, maybe like your husband, who could advocate for you?

    Whilst I don't have your anxiety issues, I do find some of these appointments daunting, and always find them exhausting. My OH doesn't attend with me, but we do spend time rehearsing what I think might happen, and discuss how I can argue against any counter arguments thrown my way. What I call my breakthrough appointment lasted almost 1.5 hours. I was not going until I was satisfied!

    Why not go over to HealthUnlocked and have a read.

    Everyone on there started out knowing very little about their conditions, and there are new members posting every day, so anything you post will be amongst others needing help.

    Like any forum, you choose a user name. I never, ever use my given name on forums, as I am a very private person, so give yourself an anonymous name and go for it. If it would make you feel better, I will be happy to give you my user name over there, then you'll know you're amongst friends.

    I do feel for you, but you are in a cleft stick.

    Jo, I'll help you in any way I can.
     
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  19. JoKalsbeek

    JoKalsbeek Type 2 (in remission!) · Well-Known Member

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    ....I'll try to remember to ask for the full thyroid panel when I call tomorrow, but I can't guarantee anything. Might be so high strung I'll forget. (When I get news that throws me for a loop, I can't even read the notes that should prompt me. It all turns to Chinese. Certainly did at last week's appointment). I could send out another e-mail, but I'll wait for the ultrasound's results first, so I have something to hang the request on.

    ...Oh boy. Here we go.

    (Thank you!!!!)
    Jo
     
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  20. Antje77

    Antje77 LADA · Moderator
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    Your response sounds pretty gracious to me ;)
    Would it be useful to you to ask for e-mail consults? I can imagine how your anxiety might mess up a good conversation by preventing you from saying or asking the right things at the right time, and hindering your capability of digesting the answers. However, you're very good with the written word, as proven by the reactions you've had on this thread.

    Were I your endo, reading a copy of this thread would likely perfectly both explain your questions and symptoms, and make it clear at what level a response should be.

    Last year I showed my internist a post I made on here about an issue regarding diabetes, and she instantly got what I meant. Likely because I wasn't blathering in her face (I do blather when nervous) but had her read a thoughtfully composed piece on the issue. You're very good at explaining things in a clear way in writing, why not use that asset?
     
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